The Human Genome Project was the international research effort whose goal was the mapping and understanding of all human genes (National Human Genome Research Institute [NHGRI], 2005). Approximately 30,000 to 40,000 human genes have been identified and located by the Human Genome Project (NHGRI). The Human Genome Project has created a dramatic increase in information regarding the structure, organization, and function of human genes. As a result, the number of genetic tests available continues to grow. This increase in the availability of testing raises important social and ethical issues for all families, but especially for families with children who have genetic-related disabilities. Andrews and colleagues (1994) reported on the concerns from individuals with disabilities about the implications of increased genetic testing. Little is known about the perceptions of, and attitudes toward, the implications of the Human Genome Project among families who have children with genetic-related disabilities. This gap in knowledge limits the development of effective educational strategies to assist families with decision making regarding the family and health care implications of the Human Genome Project.
Genetic disease is a family issue; it affects not only the individuals with genetic conditions, but also the parents, siblings, extended family members, and community. For almost 40 years, social workers have been involved in providing genetic services. Sylvia Schild began to define the role of social workers in genetic services in 1966 (Taylor-Brown & Johnson, 1998). In 1984, Schild and Black insightfully projected that the most pressing task facing the social work profession would be preparing social workers for effective practice in genetics (Taylor-Brown & Johnson). The relevance of the Human Genome Project to social work practice and policy has continued to grow, and its significance is rapidly increasing as families address the implications on their family's health and health care. The purpose of this study was to explore how families identify information and to assess their perceptions of, and attitudes toward, the implications of the Human Genome Project on their family's health care.
Face-to-face structured interviews were conducted; the Wayne State University Human Investigation Committee approved the study throughout the study period. The Health Belief Model (HBM) served as the conceptual framework for the study. Focusing on preventive health behaviors, the HBM's dimensions of perceived susceptibility and perceived threat guided the development of the survey instrument, along with the existing professional and public literature (Janz & Becker, 1984). With input from an interdisciplinary group of key informants, it was determined that case scenarios representing various family situations would be constructed, along with follow-up questions, to explore the perceptions and attitudes about the implications of the Human Genome Project on their family's health care and to identify where families learned their information. Following assessment by the key informants, with particular attention to the feedback from the family members of children with genetic-related disabilities, hypothetical case scenarios were developed focusing on themes relating to the following: insurance coverage following a job change; new treatments or cures since the discoveries of the Human Genome Project; genetic testing for young adult siblings of children with genetic-related disabilities; and prenatal testing in future pregnancies and health care coverage. The readability of the survey instrument was established at approximately grade 9, according to the Flesch-Kincaid readability level. The test-retest reliability of the instrument, assessed by interviewing one parent a second time, 12 months after the initial interview, was greater than 90 percent.
Eligibility criteria for study participation included being the mother or father of a child who has a genetic-related disability, being at least 18 years of age or older, and being able to respond to interview questions in English. …